Perhaps you or someone you know is diagnosed with a serious or terminal condition. You’re going to have to have uncomfortable conversations. No one wants to have them, but they’re necessary. Here’s how to get started and 4 questions that can help.
“This is shitty.”
A few years back, my beloved aunt faced her own end of life. She summed it up succinctly and I chuckled a little. She was right. It was shitty.
This is a common initial reaction to a terminal diagnosis. It sucks. And dwelling on said suckiness is okay, for as long as necessary, until that shock subsides.
Where do we go from there?
There are many paths to take at this stage, none of them right or wrong. But one thing is for certain: decisions and discussions are an important part of the process.
We avoid uncomfortable conversations in general.
End-of-life is no different. These are sad affairs and can seem overwhelming to think about. Although we put so much planning into almost every aspect of our lives, many go into their last days winging it. They can’t imagine tackling the topic of their own mortality or the complex emotions that arise.
The person who is ill might be focused on loved ones rather than their own circumstances. Worried about what their family will do: emotionally, financially, or psychologically. The family is often overwhelmed with concern about their sick relative. They don’t want the end filled with suffering or pain.
Each person is trying hard not to upset the other.
This can go round and round.
That’s why talking through each issue is so important. (An argument can be made for starting way earlier in life, rather than waiting for old age or illness.)
Even though they are dreaded, these talks are often worse in our imagination than in reality.
For example, people feel relief once they start talking. Uncomfortable conversations may be slightly awkward, but as they go on, a sense of understanding takes over. These are precious moments where loved ones come together to support and care for each other, despite apprehension ahead of time.
What’s the best way to get started?
Pour some tea. Or whiskey.
Gather someplace quiet, if you can, and take a deep breath. Light a candle. Sometimes sitting at the kitchen table with a good meal can help facilitate conversation. For others, sitting outside on the porch or in a quiet park might help.
Keep some tissue nearby. Here are 4 gentle questions to start these uncomfortable conversations.
1. “What do you know or understand about the prognosis?”
Their answer often tells us a lot about what our loved one understands. How are they processing the news? Listen carefully. Take notes.
Their language and words indicate a level of comfort. It suggests how you should proceed.
Do they call it an “illness” or a “condition”?
Are they going to “fight” or “seek treatment”?
Do they refer to the end as “dying?” Or do they call it “passing away”?
Fight the urge to correct or sway them in any one direction. In the beginning, simply listen. Repeat back what they’re saying to make sure you understand correctly.
Let the silent moments breathe. Stay quiet. Nod in affirmation and show compassion with a soft touch.
Remember this is not about how you feel. Not right now.
2. “What are your fears?”
Encouraging them to talk can help them feel better. Getting fears out in the open often takes away their power. At the same time, allowing someone to open up may reveal deeper anxieties. What a gift you’re giving your person to let them vent.
It might be good for you, too.
To be afraid of dying is perfectly normal because no one knows for sure what awaits them. The unknown is sometimes frightening. Wondering what will happen to our bodies, our souls and our families after our death is normal.
As the end of life approaches, some folks fear missing out. For example, a child’s milestone event or family gatherings coming up. Others might fear physical pain or discomfort.
You can provide support just by listening and validating that this is, in fact, a scary time.
You can also assure them that physical pain doesn’t have to be a reality at end of life. Discuss options with the medical team. Nurses and doctors have the skills to help patients feel physically comfortable.
End-of-life professionals also know a great deal about what to expect at this stage. When we share that knowledge with dying people, their anxiety often disappears.
Emotional or spiritual pain is a bit trickier. These symptoms can be managed with the right timing and approach.
You’ll get there.
Right now is for hand holding, listening and letting your loved one know you understand them.
3. “What are your goals? What do you hope to do with your remaining time?”
Some people have wish lists, others call them “bucket lists.” Your loved one might not yet know the answer to this question, and that’s okay too. Some folks don’t have any goals. They are content to visit with friends and family at the end of their lives.
Again, everyone is different.
Knowing what, if anything, they want to accomplish will determine what you can do in helping them.
After all, this is how the end-of-life plan starts to come together.
4. “What trade-offs are you willing to make for added time?”
Dying individuals have a lot to think about. Every choice, it seems, comes with a set of consequences. Deciding between curative and comfort care, for instance.
Certainly, most people choose both for as long as they can.
When sick people make the difficult decision to decline treatment because they don’t want to spend their remaining days feeling worse, we must honor that choice. This isn’t always easy. In fact, some might take the harder route because family wants them to “fight.”
This is a heavy burden when they already carry so much.
The opposite is also true. If someone continues treatment, even when they feel miserable, a caregiver must support them through it.
That’s your role now.
To love and support. Ask gentle questions and accept the answers. These uncomfortable conversations about death certainly start out as the toughest of talks. In the end, families better understand one another and can grow closer as a result.
Give it a try.
And, every once in a while, it’s okay to say, “This is shitty.”